When a disease remains an enigma to doctors, it’s no wonder women are confused. While the condition can be incredibly painful, some women experience no symptoms of endometriosis at all. Does it make you infertile? Is there a cure? Here’s what you need to know...

More than 5 million women in the U.S. have it – yet for many, endometriosis remains shrouded in mystery. Although thought of as a serious condition, it’s largely misunderstood, even by the medical profession.

“One reason endometriosis is mysterious is that many women with minimal disease have very severe pain, whereas many women with advanced disease have very little pain,” says Charla M. Blacker, M.D., an OB-GYN and reproductive endocrinologist at Henry Ford Health System in Troy, Mich.

Endometriosis is a physiological disease. The uterus is lined with endometrial tissue. In most women, this tissue is found only in the uterus.

However, in women with endometriosis, endometrial tissue grows in places where it’s not supposed – for example, on the outside of the uterus, ovaries, bowels, bladder, fallopian tubes, rectum, lining of the pelvic cavity and elsewhere. In rare cases, it can grow in the brain or lungs.

When this happens, the growth can produce cysts, scar tissue, nodules, bumps or adhesions – all of which can interfere with the organ’s function and trigger severe pain.

Highly variable symptoms of endometriosis and no known cause can make the disease ripe for misinformation. Here's the truth behind 10 commonly held beliefs.

1. Endometriosis is just another name for heavy periods that young women eventually outgrow.False. A heavy monthly flow is one of the symptoms of endometriosis, but sometimes they’re also a sign of another problem (usually a hormonal imbalance). Conversely, endometriosis can cause heavy periods, but not always.

Endometrial tissue within the uterus responds to your body’s reproductive hormones and goes through a monthly cycle. It builds up in preparation for an egg implantation and pregnancy. If that doesn’t occur, blood and tissue inside the uterus break down and are shed as menstrual flow.

However, because blood from displaced endometrial tissue can’t flow out of the body as menstruation, it remains and instead irritates the surrounding organs.

Menstrual and pelvic pain can have other causes, such as uterine fibroids and infections, although about 25%-35% of women with severe menstrual pain have endometriosis.

If a teen or woman has painful periods fewer than 27 days apart, with bleeding that lasts for more than seven days, she should talk with her doctor about the possibility of endometriosis, especially if there’s a family history.

Women can develop endometriosis at any point in their reproductive years, from puberty to menopause. After menopause, hormone levels decrease and menstruation ceases, so endometrial tissue no longer sheds in the uterus.

The disease is most commonly discovered between 25 and 30 years old in asymptomatic women, when they have trouble getting pregnant.

3. The only symptom of endometriosis is menstrual pain.False. “Symptoms of endometriosis are extremely variable and may range from no symptoms to debilitating pain during the menstrual period, with intercourse or throughout the month,” Blacker says.

Endometriosis can also be associated with chronic pelvic and low-back pain, intestinal pain, premenstrual spotting and painful bowel movements or urination. But these symptoms can have many other causes too.

In rare cases, endometriosis can cause pain in unusual locations with very odd symptoms, according to the U.S. Department of Health and Human Services Office on Women’s Health. For example, endometriosis in the lung can cause a collapsed lung. Or in the brain, it can trigger a seizure.

Painful symptoms of endometriosis can be erratic. Typically, it begins just before the menstrual period and goes away or gets lighter once bleeding begins. But that’s often not the case.

“Pain from endometriosis can also be constant and ongoing,” throughout the menstrual cycle, says R. Mark Ellerkmann, M.D., chief of the Division of Urogynecology and Reconstructive Pelvic Surgery at the Greater Baltimore Medical Center.

4. Endometriosis isn’t easily diagnosed.True.When endometriosis causes typical symptoms – premenstrual pain and heavy periods, for example – a skilled gynecologist should be able to diagnose it based on your symptoms, family history and a pelvic exam.

When symptoms are erratic, however, diagnosis is more difficult. One challenge doctors face: There are no simple blood tests or X-rays that show endometriosis.

“We really can only accurately diagnose the condition by looking into the pelvis” with a minor surgery called laparoscopy, Rotman says.

With the procedure, you’ll receive general anesthesia and your abdomen will be filled with gas to expand it and make it easier for your doctor to see the organs. Through a tiny cut in your abdomen, the doctor will slide in a thin tube with a light that allows visual inspection.

Sometimes endometrial tissue is clearly visible. Other times, it’s identified through tissue samples that your doctor removes during the procedure and later examines under a microscope.

Advanced endometriosis may be visible on ultrasound imaging, but earlier, less prominent tissue growth and scarring is not.

5. Endometriosis interferes with fertility.True. Endometriosis can interfere with fertility, but 60%-70% of women with endometriosis have no trouble getting pregnant.

However, even if a woman has no pain, her doctor should consider endometriosis if she’s having trouble conceiving. About one-third of infertile women have endometriosis, making it one of the top three causes of female infertility.

“Endometriosis causes infertility in a couple ways,” Blacker says:

It causes inflammatory changes in the pelvis that result in scarring, which can interfere with the function of the fallopian tubes and prevent proper fertilization from eggs and sperm.

Even when scarring isn’t present, small amounts of endometriosis result in a decrease in pregnancy rate because of chemicals released by endometrial implants. Called cytokines, these are toxic to sperm and may contribute to early miscarriage.

Having endometrial tissue laparoscopically removed can help some women with endometriosis to conceive and have a successful pregnancy. Another option is assisted reproductive techniques, such as in vitro fertilization.

“By moving the fertilization process from the pelvis to the lab and replacing the embryo into the uterus without going through the affected area, sperm and embryo aren’t exposed to these cytokines,” Blacker explains.

Because endometriosis seems to run in families, there may be a genetic component to the disease.

If your mother or sister has endometriosis, you have a 7% chance of developing it too, says Ellerkmann.

7. Pregnancy and menopause cure endometriosis.False. Because of the hormonal changes of pregnancy, it can offer temporary relief for endometriosis. But it’s no cure, and the signs of endometriosis can return after pregnancy.

In addition, having endometriosis during pregnancy is a major risk factor for premature birth and a C-section delivery, according to a 2009 study done at the Department of Woman and Child Health in Stockholm, Sweden.

Because menopause comes with a drop in estrogen, and estrogen feeds the endometrial growth, mild or moderate symptoms of endometriosis may completely subside. But this isn’t always the case, according to the National Institutes of Health (NIH).

8. There are no good treatments for endometriosis.False. Although endometriosis has no cure, treatments can successfully reduce symptoms.

One option is to have endometrial tissue growing outside the uterus removed through laparoscopic surgery. This is often the preferred treatment, although symptoms of endometriosis may return within a year for about 50% of women because the tissue grows back.

Several kinds of medications can also alleviate symptoms of endometriosis. They don’t work for every woman, but they may make the condition more bearable for many sufferers. Treatment options are individualized, depending on the extent and location of the disease, desire for pregnancy, patient’s age and the severity of the symptoms of endometriosis.

Over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs) can be used to relieve pain.

Oral contraceptives: Estrogen and progesterone, the hormones found in most birth control pills, work well if the pain or symptoms are mild, according to the NIH. Hormones can slow the growth of endometrial tissue and reduce the chances of new scarring and adhesions from developing. For some women, they help reduce or stop heavy menstrual flow, pain and other symptoms.

Natural or synthetic progesterone: Supplements of this hormone can reduce menstrual flow, slow endometrial tissue growth and reduce pain and other symptoms.

“Approximately 80% of patients treated with progesterone therapy experience a partial or complete relief of their pain,” Ellerkmann says.

Danazol, a synthetic steroid, interrupts the release of hormones involved in the menstrual cycle. It can help reduce symptoms, but because it can be dangerous to an unborn baby, you should avoid pregnancy while taking it.

Gonadatropin-releasing hormone (GnRH) agonists: These drugs block the production of certain hormones, putting the body into a temporary menopausal state and slowing the growth of endometrial tissue.

Endometriosis treatments, which are administered via pills, injections, implants, or nasal sprays, can have side effects, such as hot flushes, headaches, vaginal dryness, mood changes, weight changes, insomnia and decrease in bone density.

9. A hysterectomy will cure endometriosis.False. Hysterectomy, the surgical removal of the uterus, fallopian tubes and ovaries, isn't a cure, but in most women it will end symptoms of endometriosis.

That's because endometriosis is most common on the reproductive organs and the ovaries produce the hormones on which endometrial tissue thrives.

However, hysterectomy is usually a last resort because it takes away a woman’s ability to conceive.

10. Endometriosis is a kind of cancer.False. Cysts formed by endometriosis are sometimes referred to as benign non-cancerous tumors, but you can have a tumor without having cancer.

While “endometrial cancer is a type of cancer that affects the lining of the inside of the uterus,” the NIH states, “endometriosis in itself is not a form of cancer.”

Do You Have Endometriosis?Has your period always been troublesome? Can’t figure out your female problems? You may have endometriosis, a common gynecological condition in women that occurs during their reproductive years. Understanding the symptoms and how they impact you could take you one step closer to the answers and treatments you may need. Find out with this quiz if you could have endometriosis.

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